Sunday, June 12, 2022

Thursday, August 17, 2017

Shovels Of Dirt - Filling In The Hole Made By Poor Choices

PANS and NeuroLyme can cause some pretty negative behaviors. When you add in trauma plus other things that have a detrimental affect on the brain, it is easy to see how a child can form some fairly intense responses that quickly become habits.

Thanks to the new combo of antibiotics and supplements we are using to treat her Lyme disease, Kiana has been doing better these past few weeks. She is now at the place where she is tired of the behaviors she has picked up, but they are so entrenched they are her first response to any situation. As her parents we are learning that it works best to give her a redo or coach her through better ways to respond when she lashes out. Prior to this she was unable to process anything we told her once she flipped out on us, so we are rejoicing at this new progress.

All along Dean has been telling her that she is digging a hole with her negative choices, "Someday you are going to have to dig yourself out," he warned, "And it is going to be very hard because you have dug a deep hole." She was in no frame of mind to care, much less work on making good choices. Nevertheless, we reminded her of this from time to time.

Last night we had the same discussion, although from a different angle, she wanted to fill in the hole she has dug but wasn't sure how to go about it. I told her that every time she makes the decision to tell the truth, not lash out in anger or to obey promptly she is putting another shovel of dirt into the hole. "You are going to have to stop and think before you act," I said, "For so long you have been throwing out one shovel full after the next because you were to upset to care about the choices you made. Now you are going to have to be very intentional about filling up that hole."

She was quiet for a moment then said, "If I make a bad choice does that mean I will have to start all over again?" I explained that each bad choice is like throwing another shovel full of dirt out, but each good choice means she put another shovel of dirt back in the hole. "Someday, the hole will be full and then it will be easier to make good choices without having to stop and think.

Sometimes I wonder if God looks down and smiles when I have this type of discussion with the children. So often the things my children and I struggle with parallel each other, sometimes in incredibly sobering ways! As I talk with the children God impresses upon my heart that I must do the same hard work I am asking of my children. Sobering indeed! Other times, I may be wrestling with an issue or trying to make sense of something and as I am talking with a child, the answer becomes crystal clear. It is so much easier to talk the talk than to actually walk the walk!

Saturday, August 12, 2017

Week One Of Home School

School - the place that totally complicates trauma and everything that goes with it. There are excellent school's out there, school's that do their best to provide for the traumatized child, but the fact remains, there is a lot that can go wrong even with the best of intentions and knowledge.

For many years, parents who have children with the level of trauma ours have experienced, have been telling me home school is the only way to cement relationships and work through trauma, I said, "No way! I need some quiet time to regain my equilibrium!" Ever hear the quote, "Never say, never?" Well, let's just say I am eating all my forcefully spoken words! 

When we had one child struggling in school we limped along, but by the end of last term we had three struggling and home school didn't look so impossible after all. After one particularly trying week, I brought up the subject once more and Dean said, "I think it would be best for the children but only if you are up to it." At that point we started asking questions and looking into our options. We laid out our fleece and waited. There were several hurdles in our way, one seemingly insurmountable one, but one by one they were all taken away.

There were many reasons home school looked appealing, here are some of them.

Childen with FASD:

- need extreme structure, something that is hard to come by in a typical school setting. Field trips, special activities and birthday parties were too much stimulation for Joseph.
-they don't do well with transitions. Going to school and coming home, are two major transitions that happen five days a week.
-they need plenty of down time and some times school is simply to more than their brains can handle.
-they need all of their caregivers including teachers to be on the same level. This can be difficult to accomplish.
-it takes an incredible amount of brain power to understand the world around them, as a result school drained Joseph's brain leaving him prone to violent meltdowns.

-lyme disease brings many physical and neurological complications making school a challenge.
-some days school was simply out of the question but Kiana always wanted to go for fear she would miss out on something. Other days I could hardly get her out of bed.
-Kiana is still in the beginning stages of Lyme treatment, we have no idea what the year will bring. If she needs daily IV therapy, she will do best doing school at home.

Attachment Disorder:
-Most of our children have disorganized attachments to some extent. School is a prime opportunity for them to triangulate and manipulate others. 
-While they may fight against us at home, they are also fearful of something happening to us while they are gone. This caused intense levels of anxiety while they were at school.

All these reasons along with a host of others, made home school look pretty attractive. With one week of school finished, I can say with certainty that there was a whole lot less drama than the first week of school in previous years. It hasn't all been easy but as a whole, I think it will be just what our children need. 

The remainder of Lia's school books came in the mail yesterday so she will now be "going to school" along with her siblings. I was giving her writing lessons and other activities to keep her occupied as I had my hands full answering questions for the other three. Hopefully next week they will be able to proceed without as much help from me so I can give her the time she needs.

This is what school looks like for now. My original plans were for the children to do their work in their bedrooms so it would be quiet with fewer distractions. While I hope to get to that place with time, until they become familiar with the curriculum, they are working in the kitchen.

Our school tote containing answer keys, books and the usual school paraphernalia. All the extra books are currently stored in our bedroom, not exactly an ideal place but we are still working on a system.

Lia's math came in the mail! She will be doing Semple Math, beginning on Monday. I am excited because it looks like just the thing she needs. She is also doing Handwriting Without Tears. I wish I would have known about this curriculum when I taught first grade. 

Thursday, August 10, 2017

Perserveration - Living With FASD

Perserveration is one of the "symptoms" of FASD. Wikipedia has this description;  Perserveration is the repetition of a particular response (such as a word, phrase or gesture) despite the absence or cessation of a stimulus. It is usually caused by a brain injury or other organic disorder. 

Joseph has saying, "I want to build something - I have to build something!' He mopes about the house, melts down and picks fights, because, "I just have to build something." Quite honestly it is driving both him and his mother nuts!

He isn't content to build something with his Lego bricks or his wooden blocks. He wants to make real things like, play houses, vehicles and remote control toys that really work. We have an set of Electronic Snap Curcuits that Dean suggested I get down for Joseph. We put it away after Tristan outgrew it, and I was sure we finally had something for Joseph to build. You snap the pieces together to make a fan blow, light blink and play a song among other things, just perfect for Joseph...or not. He was thrilled when I pulled the box out of the closet but with in 15 minutes he was jumping and screaming because it just didn't work for him. He was unable to follow the directions and he didn't want any help because then he, "wasn't building anything!" So we put the game away for a later date and we were right back to the whining, crying and moaning.

To complicate matters, Joseph has a special knack for using things in any way other than the way in which they were intended. Give him a scissors and paper to cut and he will cut his clothing. A piece of wire will be used to gouge lines in his bedroom floor and sticks can be used as a hammer or pry bar.

My FASD FB group had many suggestions:

-Empty cardboard boxes, toilet paper rolls and tape can be made into all kinds of interesting items.

-Matchstick models, tiny cement bricks

-Someone suggested letting him take apart things that no longer work. He would love that, although with his penchant for hurting himself that wouldn't be an option.

-Magna Tiles

-Cardboard construction sets

Currently he is playing with a small bike that is missing the front wheel. He uses is as a plow, holds a wire to the spokes on the back wheel so it makes music when he turns it and practices taking the chain on and off. This broken bike has kept him occupied for hours.

Saturday, August 5, 2017

Summers Gone And School Is Calling

It was hard for me to see the month of August arrive because I knew what the month would bring...the beginning of a new venture for us, homeschool. My plan is to start school on Monday which will give us plenty of time to take days off during the school year if need be. Two large boxes of books, along with several smaller packages of school items arrived last week. Seeing those boxes made it all the more real, but I am getting excited. 

Here are some pictures of what we have been doing this summer. It is good I have them because I find it hard to remember what we really did.

I sewed a few dresses for Lia using leftover fabric scraps and a T shirt, fast n easy.  

We enjoyed lots of delicious food made on the smoker. These burgers stuffed with onions, peppers, mushrooms, bacon, ham and cheese were among our favorites.

We did an incredible amount of talking a certain young lady down from Lyme induced meltdowns.

One of the many mishaps poor Joseph has in a days time, He squeezed his gogurt and got it on his shirt.

Joseph enjoys making things. He took the coil from his tablet, attached one end to the battery in his tractor and the other end to his calculator. He was hoping to be able to charge the battery.

Ice cream at Dean's brothers ice cream shop, a reward for finishing school testing. Check out their ice cream shop/produce market @ Plum Creek Farm. They have delicious food and are continually adding new items.

Lia taking pictures with my phone at one of the many doctor appointments we had this summer.

We bought Tristan a mattress topper. He was thrilled!

Dean built a deck for the pool, making a lovely place to spend hot summer afternoons.

Tristan and his friend enjoying the helicopter that landed at the work picnic.

Dean smoked several chickens in the smoker. We pulled the meat off the bones and froze it, now I can pull it from the freezer for a quick meal.

Dean bought this little four wheeler, much to Lia's delight. (They have to wear helmets when they drive)

We spent a few days at the cabin this week.

Lia recently learned to ride bike without training wheels. Her little legs got tired so Dean strapped her bike to the bike cart and I hauled both Lia and her bike.

Mr Bear came to see us

Dean and Joseph went to fill the truck with gas and saw another bear, much to Joseph's delight.

They also saw a porcupine

The girls each have a rabbit and they were thrilled when they had babies. I must admit, they are cute!

And that concludes our summer.

Wednesday, August 2, 2017

Trauma, Freeze Response And FASD -Living With FASD

We just got back from a short cabin trip with my family. We enjoyed biking on the old railroad bed, delicious food and quality family time, but the thing our children will always remember is our ride down the creek in an inflatable raft. 

It all started innocently enough. I have wonderful memories of rafting on the creek as a child and I wanted my children to have the same experience. Joseph was soon ready to bail out of the raft. His weak core muscle's made it difficult to stay sitting upright and he grew more and more disgruntled as we floated along. The girls were having fun until we got hung up on one to many rocks and the sun slipped behind the mountains leaving us in the dusky twilight. Kiana was worried about bears, Lia was scared of the rocks and Joseph wanted out, NOW!

Eventually Dean and I got out and pulled the raft through the shallow spots, I tripped on the moss covered rocks and nearly ripper my toe nail off which further traumatized Joseph. As it grew darker, it became colder and the children were shivering and begging to go home. Since the water was so shallow, we made very little progress.

After a while we gave up, and decided to walk to the rest of the way. Joseph refused to get out of the raft, he just sat there and wailed. When I finally got him out of the raft, he refused to walk. He stood in the creek, frozen in place and screamed. I knew he was shutting down because he was cold, tired and scared. When he enters this state of mind, talking is useless as he can't process what is being said, so I took his hand and pulled him along. He woodenly, stumbled after me, wailing as we went. We saw a flash light come bobbing down to the water, people were obviously wondering what was going on at that hour of the night!

My brother in law was out looking for us and he came walking up the creek with his flashlight, further scaring Joseph. He froze in a panic, "There is a man up there and he is coming at us! Who is he, what is he doing?!" I told him it was his uncle coming to help us, but in his state of mind, he was sure it was another threat to his safety. We eventually made it back to the cabin where I got Joseph calmed down. He sat wrapped in his sleeping bag, hugging his stuffed animal until his meds kicked in and he was able to sleep. 

Due to FASD and trauma, Joseph typically freezes in a situation that his brain perceives as dangerous. He suffered significant neglect and frequently felt powerless to protect himself, thus when he feels threatened by something whether real or imagined, all those memories of helplessness come rushing back leaving him overwhelmed and he freezes. Typically someone with such a trauma history will seek therapy but due to the particular brain damage Joseph has, therapy isn't an option at this time. FASD has affected him in such a way that he has difficulty distinguishing between reality and imagination. What he hears, see's or reads, has in his mind happened to him. All these "false" memories only compound his trauma. He also perceives his world differently than you or I, because he processes information through his unique point of view, leaving him with distorted memories. All this, along with a myriad of other things, makes therapy ineffective. 

Knowing this, when Joseph freezes we don't bother trying to talk him into cooperating, we don't rationalize, nor do we try bribe's. Instead, we do whatever it takes to get him moving and out of his frozen state of mind. This article does and excellent job of explaining trauma and the freeze response. 

Like my FB page: Tales From Our House to receive new posts as well as view links on trauma, attachment and FASD - Thanks for reading!

Thursday, July 27, 2017

Accepting FASD

The other evening as Dean and I were talking over the happenings of the day I said, "Do you think I have accepted Joseph's FASD?" This was a loaded question because I was struggling mightily with FASD and the repercussions it has on our family.

See, Joseph does best with a very low key life. Most times he is satisfied with this, content even, but occasionally he has a "good day" with a higher than usual ability to reason which causes meltdowns. It is on these days that he feels frustrated with the restrictions FASD has placed on his life.

Recently Dean bought a small four wheeler and Joseph begged to drive it. Steering, controlling speed and watching where he is going is more than Joseph's brain can do at once. However both girls were driving it and in his mind it wasn't fair if he couldn't as well. We were faced with a dilemma. Saying he can't ride would bring on an epic tantrum. Explaining that he wouldn't be able to would go over his head, because in his mind if his little sister can, so can he. Letting him ride would over exert his brain bringing on melt downs from too much stimulation. Too much stimulation results in several days recuperation, while a tantrum is over and done with. It was a no brainer, until my heart got in the way...

Joseph had been having a rough day and the last thing I felt like dealing with was several more days of increased behavior because we left him do something he was incapable of handling. On the other hand, I felt cruel saying no because I knew how heart broken he would be. In the end, he rode the four wheeler, it didn't go well and I dealt with several days of over the top behavior from over stimulation. After he rode the four wheeler I was rebelling deep inside because I knew what the next few days would be like, hence the discussion.

Dean replied, "I think you have accepted it as a whole, but there are times it takes accepting all over again." I can't help but wonder what life would be like if Joseph could work and play alongside Tristan, if he could do new and exciting things without having to suffer for it for the next days or weeks? Think of the fun he could have with his cousins, the freedom Dean and I could have if we wouldn't have to watch him every moment of every day? If I am honest, it makes me angry. I am not angry at him, or his mom - because quite honestly, neither of them are to blame. I am angry because FASD robbed us of what could have been.

So have I accepted that this is going to be a lifelong challenge for Joseph and for our family? Most days, yes. Other days I grapple mightily with it. On the days when I struggle, guilt is also present because why should I feel this way when in reality Joseph is the one who has to work through the difficulties every moment of every day. In the end, it comes down to making the best of the hard times and cherishing the good times.